Sunday, September 2, 2012

Bear with me...

... this may be lengthy.

I can't believe it's been well over a month since I've written. I come here often... write a few lines. Save what I've written. But it never seems good enough. I never feel like I'm able to express my feelings well enough. It's hard to come on this blog and write something negative, because I honestly don't have a thing in my life that I can complain about. Except for the fact that I miss my baby. I miss him more these past few weeks than I ever thought I could. I don't know if it's the "moving forward" and trying to pull my life together that's making it harder, but I miss playing with him. I miss kissing him. I miss rocking him and holding him close. I miss him being so bossy and and wanting us to switch his toys 100 times in an hour. I just miss every little thing about him being here with me. I have times of complete and overwhelming sadness that I can't control. And when that sadness takes over, which lately... has been more frequent, it's getting a little more difficult to hide. Sometimes I feel ashamed to still be talking about how sad I am. I think about other moms and dads who have lost their children. I pray and hope that they have the support that I do. I feel blessed beyond words that I can write on this blog, and I have an amazing support system (mostly fully of kind and compassionate people who have never even met me) who send comforting words and offer up prayers for me. And I also think about my family- who do so much to show me they care. I know that everyone who has lost a child does not have that. Not everyone who has been through such a traumatic loss has the support system that I have. And it makes my heart heavy to think that someone out there is going through what I'm going through without support. I can't imagine how much harder that would be. And that is why I thank you. All of you who are still there, still commenting on each post, still offering prayers and support. It means so much. Because YOU all are helping me get through this very very difficult time, so that one day, I can heal myself and help others who have been through this same thing in the best possible way.

I want to thank all of you, also, for your very sweet comments on my previous post. You guys really know how to make a girl feel special. Stephen and I are SO grateful for your prayers, support and well-wishes as we begin this next new chapter of our lives. We are actually excited to say that we will be building a house soon. We plan to begin in the next few weeks. Some people might think that planning a wedding and building a house at the same time is crazy... but I can assure you that after what Stephen and I have been through together, that this will be a walk in the park. We are just grateful for the great things and amazing people in our lives. I don't think that there is anything he and I can't handle. We are the BEST team.

Along with our engagement, house plans, and wedding plans... there are also many other positive things going on in my life.

I really want to focus on some more of the good that God is doing and how His GRACE has been more than sufficient in my life.

I am still seeing my counselor once a week.

She's one of the biggest blessings that God has placed in my life.

I love her.

She is walking me through the most difficult time of my life, simply by listening... not placing judgement... not telling me what is right and what is wrong. She's just there. At first, she was just a stranger who I would cry to. The moment I walked in the door, I would just cry. I would usually save up all my tears from the week just for her. I figured, if anything... I can certainly just use a good cry once a week, even if she doesn't help me. And now, even after about 6-7 months of therapy, I still cry at every session...but I truly feel better every time I leave her. I think of Lindsey as a friend. I can tell her anything. Things that I'm feeling that I can't just tell anyone else.

She listens, she doesn't sugar coat, she doesn't pass judgment and she makes me feel comfortable.

If I miss our weekly session... I am not someone you want to be around.

And I miss this week's session due to the hurricane... (and I'm sure my parents and Stephen can vouch for my crappy attitude).

Thank you, God, for Lindsey.

I have also been seeing a personal trainer, who has become a great friend as well.

I met her a while back when Tripp was still here with me. She came to visit with my dear friend Amy, who introduced us. She talked to me about some exercises and nutrition that day, but had wanted me to start coming to her class. It wasn't until about a month ago that I decided to take her up on it. And I'm SO glad that I did. I've met so many great girls at the gym and it really has done wonders for my mind and body! You can visit Jenn's website HERE. And if you want any tips or inspiration on getting your body back after having a baby, check out her book Mommy Movement.

Jenn is someone I look up to her in so many ways. She really CARES about her clients and works so hard to help us feel good physically and mentally!

Thank you, God, for great friends that lead to more great friends.

And oh yeah...

My sister is pregnant!

She and Mike are having a baby boy, due on December 22 of this year. I know, I know... I've kept this secret from you guys for a little while too, I'm sorry!

This is such a special time for them, and I am so happy for my amazing sister and brother-in-law.

I can't wait for them to get to experience the love of a child. Because there is absolutely no other love like it. They will be excellent parents, for sure.

This, of course, is another bittersweet moment for me in life (just as most things have been) because

I think about Tripp not being able to play with his new baby cousin- or even get to meet him.

But at the same time, I can't wait to tell my new sweet little nephew about his brave and amazing older cousin who lives with Jesus in heaven.

Both our family and Mike's amazing family are super excited to meet this new sweet baby.

I quickly volunteered myself as his godmother, simply for the fact that I, not only will be the best Nanny, but also because I told my sister I would disown her if I wasn't chosen for his godmother;) Sorry, Mike... hope that is okay. I'm usually not that bossy.

So that's just some things that have been going on in my every day life. Seeing my counselor, working out at an amazing new gym, and spending time with family. Now... for the some of the big events that are coming up (Sorry, I figured this would be a long post since it's been a while).

Don't leave yet!! I'm almost done!!

The first upcoming event that I'm involved in is an annual fundraising dinner for The Restoration House here in Hammond, LA. The Restoration House is introducing "The Great Turn-Around!" And I am SO honored to have been asked to be the guest speaker at this event. This is an amazing local non-profit organization with a cause that hits close to home. The Restoration House is dedicated to helping women who are experiencing an unplanned pregnancy. They offer free pregnancy tests, ultrasounds, lay counseling and education classes to these women. Some of these women get to actually SEE their babies through an ultrasound and get to see LIFE. This organization "protects life and restores hope" (their motto). And when I think of Tripp, I think of LIFE. I think of everything that his little short LIFE gave to me. I think about how hard I fought for his LIFE. So I am humbled and honored that they chose me to speak for such an amazing cause. I hope to make them proud and hope to help them to raise the money they need to continuing helping our community.

The event will be held on September 20, 2012 at 6:30pm.

It will be located at Chesterton Square here in Ponchatoula.

It is a FREE event to attend. You just need to reserve your seat in advance. If you would like to contribute, you can become a sponsor. Or there will also be ways of contributing at the end of the event. Here is the link to be able to register for the event. Remember- it is free to register, but you need to reserve your seat if you want to attend. There are approximately 180 seats left.

If you aren't local and won't be able to attend, you can Donate to this amazing cause... click HERE to ready about the Restoration House and what they do, and there is a donation button at the bottom of the page! Just FYI... the people running this organization are some of the most sincere people that I've ever met. They truly love what they do. They inspire me to want to do more in my community.

I don't know if I've mentioned this on my blog yet. A few months after Tripp passed away, I got a call from the executive director of DebRA, Brett Koplean. He asked me if I would accept the DebRA Spirit Award this year. Previously each year, this award is given to a person WITH EB. But he told me that this year, they wanted to give it to me. Talk about an incredible HONOR! Because trust me, I do NOT feel like I deserve to be honored more than someone who actually lives with this disease (they are my heroes). But I knew that I was accepting this honor to be able to speak in Tripp's name. To be able to be HIS voice for this disease just like I've tried to do for the past 3 years. And to also show this disease from a different perspective... being a parent of a child with EB.

SO... I will be speaking at DebRA's 14th Annual Mats Wilander Tennis & Golf Benefit in New York on October 1st. You can read more about the event HERE.

Mom will be taking the trip with me. We are so excited to be able to get to meet so many people that I already feel like I've known for years! I want to thank Brett Koplean and everyone at DebRA for this amazing honor.

Mom and I are hoping and praying that everything works out and that we will possibly get the chance to go on set and watch a taping of the new season of Sesame Street while we are in New York. Elmo (Kevin Clash) and his assistant Kimberly (and pretty much the whole team at Sesame Street) have been so amazing to us. They were supposed to fly Elmo here to meet Tripp the week before he went to be with Jesus. But it was too late. After that, they were so kind and said that they were devastated that it didn't work out and that they wanted to offer us to come to New York and watch a taping of Sesame Street and be able to meet everyone there who had been involved in making the CD's for Tripp. So we are hoping that both of these events will be able to coincide and that the timing will be right. I think that would make my LIFE to be able to actually meet the man whose voice made my baby boy smile the biggest.

99 comments:

Your blog posts are always so moving...I am so, so sorry that you are going through this terrible loss. I wish that no parent ever had to go through what you are going through. But never feel ashamed for your sadness...you are experiencing a loss that most do not. But we serve a mighty God and I know that He is holding Tripp in His arms as they both look down on you each and every moment. God Bless!

You are an inspiration and your little angel is forever watching over you and with you every moment of your life until it is time to be reunited with him again! God holds him in His precious arms every day and all the while they are both smiling down on you. God gave you Tripp for a reason mainly because He knew that Tripp needed a special mom, a great mom, a selfless mom, a dedicated mom and that was you! What a gift to be specially chosen to give birth to one of God's angels! Just as our Blessed Mother was chosen to give birth to our Savior! Tripp's suffering had such profound meaning! We cannot understand it because it has "divine" meaning. Every day your precious child suffered and YOU suffered, both of you were saving souls. I am sure you will meet them all & Tripp is playing with them in heaven right now. I pray that God will continue to heal you and bless you abundantly as you loved much !!!

you are my hero. This month is the anniversary of Robbie's accident. So, the day of his accident is the day his world changed forever and destroyed mine. Without my Lacey girl I don't know how I would have made it. You often say what I cannot. Bless you.

That picture of Tripp and Elmo first getting to know one another is PRICELESS :D

I have to say what I've felt all along when reading your posts... your ability to say it from your heart, what you are feeling to the best of your ability at any given time, is a blessing to the world. I believe this to be true about anyone who tells it like it is as it's felt, from the heart... raw. That is what keeps us from feeling and being alone.

Do not ever feel shame for your feelings. Shame helps nothing and feelings are what they are. If anyone else judged you on your sadness, you would set them straight as you should ;) So why then do we judge ourselves so harshly? Believe me, I understand it... I'm the same way. I'm trying now, to give myself as much support and empathy as I would give anyone else. I am not less deserving... nor are you.

God Bless you, bless all of your supports, and all of the wonderful events upcoming in your life.

Courtney, I'm so happy for you and Stephen. Congratulations to your sister and brother-in-law (and to you as godmother). Congratulations to you on the awards you are receiving. I'm so glad you continue to share your feelings with us. When losing someone you love and spent your every waking hour loving and caring for them it takes time to find a new normal. I lost my husband 7 1/2 years ago and I still have my moments when I feel the overwhelming grief hit. It's okay, it's part of life. I just let the feeling roll on through and have a good cry. Then I start thinking about all the happy, fun filled times we had. I keep Tripp, and you and your family in my prayers. I find myself uplifted many times when something gets me down I think of all Tripp and you have been through and know God is there. He is my saving grace. I look forward to your posts. God Bless you and keep you happy.Gayle

May God forever smile brightly on your soul. It breaks me to know what you must go through but to know that God chose you to be Tripps mother, I don't think he could have ever chosen better. He handed you the most precious gift he could give you knowing what his life would be and he he chose you because he knew your obvious capicity for love,compassion and kindness. He knew you would never stop the fight in Tripps honor or bringing awareness to EB. You are a gift to the world and you actually thank us!! You are unreal Courtney we thank you for being the blessing your beautiful baby boy needed to stay here on Earth as long as he did and bring millions in the world together of this awful disease most of us never heard of. A God send Courtney YOU and Tripp both..God smiles on your soul and so does Tripp always believe and remember that.

Courtney, I admire your strength, courage, tenacity, and love. You continue to show such poise. Whether you realize it it not, your light has shone many a person the things to be thankful for, & the blessings we have. Thank you, sister! You deserve every bit of peace, recognition, & honor bestowed upon you! Tripp is beyond proud of his mommy!!! I just know it!PS here are a few ripples you have created in our water of life: I have been a nurse (LPN) for 18 yrs & had never heard of EB (& I'm a self proclaimed medicine nerd... ALWAYS looking up EVERYTHING). I will have my RN soon & wanted to work in NICU ; now I also want training from DEBRA to be certified to treat & educate parents of EB children. My 9 yr old dtr has said she wants to be a DR since she was 3yrs old. Now, she says she wished she could've cured Tripp, but she wants to be the DR who finds a cure for EB!!! I made a power point & emailed it to everyone on our hospital email server ... From the Be the ONE VIDEO....you & Tripp have touched so many lives, you will never know, here on Earth, how far your story has grown.

Courtney, you continue to be such an inspiration. Thank you for sharing all your good news, even if some is bittersweet. How you continue to embrace life and focus on goodness and happiness makes me want to work harder at appreciating all that I have. I am so happy for the news of your impending marriage, house, aunt-hood, your honors. You deserve it all and you honor your little boy beautifully! He would be so proud of you. He knows most of all the journey the two of you traveled together... and I am sure he is watching you and smiling at all your hard work to make a life for yourself. He loves you and if you are happy, I am sure that is his joy too. His love shines on all that you do. Much like HIS love does. God bless Tripp, he is always in our hearts!

I just wanted you to know you truly inspire me to be a better person. I love reading your blog and look forward to seeing how you are doing. It makes me happy to see things in your life are looking up. You deserve all the happiness in the world. Praying for you and your family always!! Also congrats on the engagement.

Courtney,There are no words but to say that you are the most beautiful person I have ever known (even though we have never met). I continue to pray for you and look forward to your posts. You are so real and honest and that means so much.

Congrats on your wedding and house plans. I know it will be crazy but exciting and fun. YOU DESERVE THIS COURTNEY. When you feel you don't - think about Tripp and telling him he doesn't deserve something good - it would be impossible. Just as you want good things for your children no matter what they do or have done, so does God want to pour out good things on His children. It will stir pain and sense of loss and emptiness as you go through the new adventures without Tripp but there will also be a sense of renew and strength as you start a new journey.

So excited to hear about your new addition coming soon. Being an auntie is the best. When I was told I will never have children due to cancer, my sister had her first son a few months later and he was God's greatest gift to me. His laughter and smile melt my heart beyond words. We have a bond that no one else can match. I believe God gave him to me to fill a hole and allow me the joy of children even though I will never have my own.

Praise God for you counselor and friend, Lindsey. I know that there is nothing better than someone you can trust and work through the darkest times of your life with.

I am so proud of you for getting yourself out there and doing something for YOU. Having an outlet for your frustrations, anger, pain, and hurts is the best medicine EVER.

Good luck with your speaking engagements. They could not of picked a better person. You will be amazing. Wish I could be there to support you and to give you a hug. I will be praying for you.

Keep on friend, you are stronger than you know and a blessing to so many. Especially me.

i am terribly sorry for your loss. i read your posts and saw pictures of him and my eyes watered, i know hes in a better place now. i have a small baby daughter and i get upset if shes even a little bit hurt, my heart breaks knowing what you and tripp went through... i wish you nothing but happiness and health.. i donated to fight the disease.. bless you.

i recently discovered your blog and after reading your posts you and your son tripp are heroes in my eyes. I am a father with a 6 month old daughter and she is literally the most important thing in my existence, after looking at those photos and knowing what you and tripp went through, even though im not a person that cries much, my heart literally broke as my eyes watered. I know tripp is in a better place and i wish you nothing but happiness and health.. i plan on donating monthly to any eb charity to fight this disease. bless you and your family.

Always so uplifting to hear from you. I was in North Louisiana this weekend and got to share Tripp's life and story with one of my best friends, via this blog. We had a great big crying session into the wee hours of the morning over your amazing little fella that I never even knew. It was so fun to show her all of the musical talent that God blessed Tripp with. My friend just stood there with her jaws agape in awe of his drumming talent. I felt like I was bragging on my own child. :) Crazy, huh?! It is nice to hear that great things are happening in your life! I think you will start to feel a different sense of fulfillment in life now that God is providing opportunities for you to be able to advocate for different organizations in Tripp's honor. I cannot imagine how many more lives you will be able to impact - but none more important than Tripp's. From one mom to another, Thanks for being such an A.M.A.Z.I.N.G mama to such an A.M.A.Z.I.N.G child. May God continue to bless you every day of your life. Kelley - Baton Rouge

Courtney, You are such an inspiration to all of us. I think what you are feeling by missing your baby is very normal. I know that you did everything that you could possibly do for your baby. Congrats to you and Stephen will be very happy. You are blessed to have such a wonderful family, and friends who truly love you. You will be blessed forever. Take Care, and keep up posted.

Just wanted to share a little story with you. I'm a college student working part-time at a church daycare here in MS. When I got the job, the lady in charge was telling me about a special little boy in the 4 yr old class. She assumed I didn't know what EB was, and was surprised when I told her I did because of a blog I had a found and a mom/baby I had fallen in love with. This little boy's case isn't quite as serious as Tripp's, but they said he still won't grow up to be even as old as I am, which is only 19. I think of your sweet baby every time I see this little boy, and my heart aches because I wish Tripp could have gotten to play like him too. This little boy not only reminds me of Tripp, but also inspires me. This little boy doesn't let his EB get in the way of anything. Just wanted to let you know I'm always thinking of you and your sweet Tripp. I am so excited for all of the good things happening in your life! God Bless.

You are such an inspiration as is Tripp. I always come to read your blog post when it pops up on FB. I just can't even begin to imagine the pain of missing your baby boy....I think of you often and send prayers of comfort. I will never forget you or Tripp. <3

Courtney, you're always in my prayers. I'm glad things are going well for you. Don't ever apologize or feel bad about how you're feeling...there's no right or wrong way to grieve. Wishing you much peace, love & happiness.~Bevin

Courtney you continue to inspire us all. God chose well when he gave you Tripp. I also believe he has already met his baby cousin, gave him a few tips on how to get his way :-). Our Family continues to pray for you & yours. God Bless on your new journey He has planned!

This post was the highlight of my night, it is so good to hear from you and to know that you are alright and pushing through, Courtney. Seeing where EB awareness was two years ago and how hard it was to find information and education sources for Angie and Dave when Aubrey was born and seeing it now, and the amount of people completely dedicated to it, and helping these wonderful families. It is a complete shift. And shifts only happen with a major event or happening. Tripp, his life, you,and your beautiful,yet sometimes heart-wrenching, words that told his story, is what made EB the 'worst disease you never heard of' NOW heard of, and with that has brought in so many more funds for research, awareness of hundreds of thousands, and Tripp's life will always be that shift that started the road to the cure. I love you for your beautiful words, for reaching out to the other families (especially Ang and Dave) when you had so many other things to do, and I love you for being you, Courtney. Such a beautiful soul that deserves all the great things coming to you. xo sweet girl. - Andrea Ness

Always glad to see you check in and let everyone know how you are doing. I have a question that is hard to ask but I need the advice. A friend and coworker of my husband just lost their child today in a drowning accident. I can't even imagine losing a child and what they are going through but want to offer my help in some way. What would have been nice or was nice for your friends to offer after Tripp passed? They have other children so I know I can offer to babysit, grocery shop, etc just wondered if you had any input. Thank you again for sharing your and Tripp's journey as hard as it may be.

Courtney, May God continue to bless you every day. You are an amazing woman and my heart hurts so much for your loss. I know that in life God has a plan for all us and it was his plan for you to be Tripp's mother and to share his journey with all of us - and your journey. I will continue to keep you in my prayers and I know your baby boy is so proud of you and so glad that God gave him you to be his mother. You are an angel living here on earth. God Bless You!!

It makes my heart leap to hear all of these good things happening to you and your family, Courtney! Tripp is definitely watching from heaven and enjoying all of this right along with you, no doubt in my mind!

Keeping active and having someone to talk to is totally important, and so I want to say how proud I am of you for continuing with counseling and for starting up with the gym! I'm so happy for you! And best of luck with the wedding and the house and all of your other plans - you are SO blessed! :)

I visit your blog often & probably every time I cry (tho I've never commented until now). You're a very, very strong woman and mother in my eyes & hope that your life continues on with peace and happiness. You shouldn't feel guilty for still being sad or for continuing finding happiness. I know your little boy would only want his mommy to smile & be happy. Thank you for sharing your story, your life, and your little boy with us. I have talked about you to my family & we all admire you.

Oh Courtney, I cry every time I read your posts. I just can't imagine losing my son! I am so lucky to have stumbled across your blog and learn about EB and tell others about it. There was a baby born on August 23rd with EB (the most severe) in NY, but Easton is now at Cincinnati Children's Hospital where they are experienced in EB. My breaks for this family too. I wept looking at photos of his skin.

I love reading upbeat things from you. You have so much support and are so loved by the blogging community! To receive that honour too, wow... :) xx

Courtney I think about you all the time and pray for you constantly. I check my blog roll everyday hoping for an update from you and hearing about all of the amazing things you have going on in your life makes me so happy for you. You deserve it all. Don't ever feel bad for being happy. That precious boy wants you to be happy!

How blessed you were to have Tripp and he, you. How sad you had to lose one another for the time being. Don't feel guilty about "still" being sad. There's no timeline and as a mother, I can't imagine I'd be any different. I miss Tripp, and I never met him, so as his mom, you're entitled to whatever grief you need. I'm glad to see you're living life as well. Tripp would be proud of his mommy.

Hi Courtney! So great to hear of all the news, the good, the better, and the wonderful! I can't tell you how many tears I left on the treadmill during the first year after Bella died. Exercise was where I vented so much of the grief. Also, I remember the pain of moving on at about the 6-7 month mark. It was as if as time kept moving me further and further away from Bella. I still haven't learned to deal with that. You are working through your grief as well as anyone could. GREAT JOB. REALLY great to hear of all the blessings in your life. Much love, Tim

It's great to hear from you again Courtney! I'm happy to hear that you have so many good things happening in your life... you definitely deserve it all! God definitely has a plan for you and your are giving it all you got. You have so much information to share and love to give. All organizations that have the opportunity to work with you are very lucky. We're still praying for you and Tripp up here in Bossier City. Take care and good luck with all your big events you have coming up!

Dear Courtney,I always look out for you to see your latest update and I always wish for you that you have lots of happiness. I know thats impossible right now but I still pray that one day that will be possible. Your posts always bring a huge lump to my throat and maybe thats because I too am a mommy, to my little girls and I get inspiration from how you are facing this. Love to you and hope the sun shines a little brighter for you as each day passes. Tripp will make that sun shine xxx

Courtney, you are always in my thoughts and prayers. Thank you for letting us know everything that is going on in your life, there is no need to "hide" anything, everyone here loved Tripp and loves you. I know Tripp is so proud of you and all you are doing! God bless you.

Courtney, thank you so much for continuing your blog. I look forward to reading anything you write. You are an inspiration to everyone. Congrats to you and Stephen, your sister and brother-in-law, you becoming a Nanny, your award and speaking engagements, wedding and new house. Meeting Elmo and cast is just so exciting and amazing. Enjoy Elmo as Tripp would have and would want you to. You, Stephen, your family will always be in my prayers. Hugs sweet girl! Keep up the great work you do for EB and of course for Tripp. :)

Will be praying for you as you plan your wedding and build a house. :-)

Y'know what I think - I think right now Tripp is getting to spend time with his baby cousin, as baby waits to come down to Earth to be born. I think he's telling him all about his soon-to-be mommy and godmother and grandmother and what amazing women they are. :-) I think Tripp is telling his baby cousin what an amazing family he is going to have, and to give lots of extra special love to his Auntie Courtney.

Hi Courtney. It is always so good to hear from you with a new blog post. So many emotions can be overwhelming. I want to thank you for letting us in. You and your family are so amazing. You all are a permanent ficture in my prayers.

This sounds like a very exciting time in your life. I'm so happy for you. What an honor to be given the award! I hope all goes well for your sister and her new family! That little baby is so lucky to have you for an Auntie and Godmother. Congratulations! I'm glad you're doing well.

Courtney - I was just introduced to your blog through my on-line mom group this week. I cried my way through your posts. You are in my prayers and thank you so much for sharing Tripp with us and demonstrating your strength as well. I am so happy that you are ready to embark on a new chapter of life. You are in my prayers. God bless you.

I am so happy for your engagement. And for all the happy things that are happening. I can imagine how going To the gym is helping you To keep your sanity. In the end of your post i burst in To tears though. Sweet wonderful angel Tripp. It is still unbelieveble To me that they still don't have a cure. Finally i want To say that i have never ever "met" someone as humble and amazing like you. Your husband To be is a lucky man and i am sure tripp is happy for his mother. I wish you all the happiness you can get. And i wish with all of My heart that you heal more and more each day. But ofcourse it is so hard :-( god bless <3

I've been reading about your journey from about the time of Tripp's first birthday and you have always been so inspiring, regardless of the circumstances - good or bad. Now, reading your words is like expressing MY own feelings as I lost my dad just two months before Tripp joined Jesus. Thank you for continuing to write. Reading that you're doing well, yet struggling too, is comforting to me that my emotions are normal. I will continue to pray for you an your family!

I'm so proud of your decisions to stay active. So many parents just crawl in bed and stay there. It takes remarkable strength to do what you are doing, and it's fantastic. I hope you never feel that fun things like a wedding or building a home betray your sorrow over the loss of your son. Tripp would want all of this for you, and more. He is rejoicing, and still knows in a perfect way that you are still devastated. You are balancing your life beautifully! As always, sending prayers...Love and Hugs, Jan

Congratulations on the Debra honor!!! I continue to wish you & your family only the best. Day by day, my dear. It's been almost 9 months since my sweet boy has been an angel and I cry every therapy session and am in a funk if I happen to miss out.

Courtney, you and Tripp will always hold a special place in my heart. My youngest daughter, Ashlyn, shares the same birthday with Tripp. I have kept up with your blog now for a very long time, and every time Ashlyn reaches a milestone, or does something to make me smile, I think of Tripp. You are such an incredible woman of faith, and I have no doubt that Tripp is telling everyone in heaven of the wonderful mommy he was blessed with. You are an inspiration to so many people. Stay strong, and congratulations on all the wonderful things coming up in your life!Love,Maggie (mom to Tripps birthday buddy!)

Congrats on your Debra award! Tripp is smiling down on you right now. I thought I was going to be able to get through one of your posts without crying but those last pictures really got me. Sweet baby. Never feel guilty about moving on. It is hard...so hard but Tripp wants you to be happy and he wants you to live and live life to it's fullest. Take care *hugs*

Honestly, what a great post!! I've been so sad for you and scared for you over the last half year because your posts have been pretty torturous to read. The pain was pulsing through the screen and I was so afraid for you. Now, this post... while you are still sad and always will be, I can feel the change in you now. You have so much to be happy about and it was a great update. You are such a strong Momma!

Congratulations Courtney! You may not think you deserve these honors but I certainly do! I consider you on of my heroes! I'm so glad you and Stephen are doing well and have things to plan for in the future! It's so exciting! I think you will be a great speaker at all of your events and I'm thankful to have found your blog and that you are still writing! Keep the posts coming! We like to know your ups and downs and hopefully we, as your support group, can offer words of comfort! I pray for your peace and healing and LIFE daily! Have fun in New York, it's beautiful!

Oh my Gosh Courtney, Every time I see you have posted something I tell myself that I'm not going to cry - and I always cry. Congratulations on the DEBRA award - you really do deserve it more than you know. If it weren't for your blog I myself would never have heard of this horrible disease along with thousands of other people who I am sure have contributed money to find a cure in Tripp's name. I certainly hope you are able to see a taping of Sesame Street while you are in New York. I think of Tripp EVERY TIME I see Elmo and I saved the episode where he sings "Little Butterfly Friend". As always - my thoughts and prayers are with you and your family. HUGS from Virginia. Gloria

Hi CourtneyIt is so lovely to hear all your positive news and I agree with the DEBRA organisers that you totally deserve to be honoured in Tripp's memory for all you have done for EB awareness. Just from learning what I have learnt from you, I alone have told over 100 of my friends and family about this terrible illness and if they all tell another hundred, soon it will have the profile needed for major funding into treatment and a cure. You are an amazing woman and have made me a better mother and person in the example of grace you have set.Thank you x

I think about and pray for you often. You are a true testament of what it means to be a mommy. Thank you for giving me the strength to battle through tough days and making me realize to not sweat the small stuff and to enjoy my baby everyday! You make me want to be a better mom. Blessing for you always!

I still pray for you and Tripp every single night. Your story has affected me so deeply and I will forever be grateful to you for sharing that wonderful little boy with us. I lost my Mom in October 2011 and I just went through a rough patch about a month or two ago. It is weird how grief just ebbs and flows and changes constantly huh? Some days I anticipate to be difficult aren't and some days that I would never expect to bother me will knock me sideways. It does get better; the pain becomes more "fuzzy" around the edges as time passes. There are definately times where the pain is sharp again but I am finding those becoming fewer and less intense. I know I will miss her every day for the rest of my life just like you will Tripp, but I know that there will be, God-willing, lots and lots of sunshine in our futures! Keep on keeping on and know that you have an eternity with Mr Tripp ahead of you :o)I wanted to let you know that I shared your "Brave Little Soul" poem with a family in my town that just lost their 3 year old boy Landan to brain cancer last week. They read it aloud at his funeral and I know that it comforted them and all those that heard it. Just another example of how you and Tripp have made a positive impact in this world. Tripps miracle is still alive!!!! Thank you!Much love and prayer to you and your family!!!Blessings from Kelley in MO

I can't begin to imagine how bittersweet all these blessings are in your life, but I'm praying that you find some peace. We've never met, but I have said many prayers for Tripp and you. God always has a plan. He knows the pain you've been through. Thankfully He is with Tripp and forever looking over you.

Courtney, I came across your blog a few days ago and I love/hate it. I love you. I love Tripp. I love your mom. I love that you are spreding the word and trying to find a cure. I love hearing how strong you and Tripp are/were. I love that it makes me want to be a better mom (I have an 18month old little boy). I love that it helps remind me what were are really here for. But I hate that you had to go through this and that there is even such a thing as EB. And I hate how much time I have spent here in the last few days (I have read your whole blog in just a few days, between nap time and at night)hahahaha.But you have forever touch my heart and helped me to truly be grateful for my blessings. Thank you!!

You are such an amazingly strong and incredible woman. I've followed your blog for the past year, or so, and for some reason never have words to articulate how I actually feel when I hear your story. Congratulations on all of the adventures you're about to embark on - and to your sister! (:

I hope you know that no matter how often you wish to purge your broken heart, all of us will be present to comfort you for as long as it takes, even if it's a lifetime. Losing your Baby is not a trivial life event, but of course you know this.

We know that you will ponder all the what if's and the should have beens. We know that walking into retail stores and seeing that next size up in baby clothing is a painful reminder that your baby won't get those moments, those milestones.

I'm not trying to remind anybody of such painful moments, I just want to convey that you are not alone and that those moments where you find yourself reflecting and acknowledging the moments you won't have with Tripp... we think of them too, as Mommy's...

It's OK to celebrate all the wonderful things in your life, to move forward and ahead... it's what Tripp wants for you and no doubt that with each and every triumph, he's cheering you and Stephen on!

Courtney... please don't leave us out of your journey. We wish not to pry or be where we are not welcome, but you have come to mean so much to so many of us.

I honestly get excited when I see you have posted! I kick myself in that I wasn't here the day you did post because I love your words and expressions so much. Everything about you makes this world a better place.

You remind us to have FAITH in the darkest of places. "If she could be carried through the loss of her baby, then I can do this... "

I love reading of all the things you are doing now and your counselor sounds amazing. I love how kind you are about those that have been there to tend to you along the way. Doctors that received your highest praises... friends, family... even strangers.

We may not have had the tremendous pleasure of meeting you, but you have touched our lives in a way that perhaps only God can show you one day.

Thank you, for opening yourself up to the rest of us. For sitting with us, crying before us, leaning on us, for trusting us with you, your feelings and your expressions.

You are truly a treasure.

We can't wait to hear how the house building goes and the unfoldings of your wedding and the arrival of your nephew... and all the wonderful things that are to come for you.

Another beautiful post on your blog. I'm so touched at the honors you are living because of the precious life of Tripp. No one says you have a time limit on your grief. I'm certain your heart will ache forever for your little guy. You are an angel to many and Tripp IS YOUR angel. Thank you for sharing his life with us. And thank you for continuing to share your life as you move through your grief and broken heart.

A new chapter in your life is unfolding through the many blessings God has in store for you. Those around you are being blessed through your special spirit and through your special son. God will always watch over you and hold you in times of sorrow and love.

How exciting to be planning a wedding to a wonderful man and to be building a new home. Tripp will be with you every step of the way making sure you get the things you so deserve. Keep the Faith and keeping taking those steps forward so you can teach the rest of us how it's done.

You're amazing. I'm so grateful I stumbled onto your blog when I did. You've taught me a lot about faith and the strength it takes to move forward when your heart has been ripped out of your soul.

you are such an amazing and beautiful person, inside and out! you are my hero, you are my inspiration, a wonderful mom that I wish I can one day be to my two boys! you deserve to be happy, thank you for being here for us, sharing your feelings and thoughts. we love u!!!

I came across your blog when I was doing some research for my master thesis (i am a medical student), which is about the treatment of severely ill and/or disabled newborns and infants (including diseases like EB, Spina bifida, etc...)! While I was reading Tripp´s story, tears were streaming down my face and ever since then i really admire you and your sweet, brave little man! I would be honored if you would allow me to dedicate my master thesis to Tripp! I wish you and Steven all the best!Love, Lisa

Ps.: Please excuse my english, i am not so good at it, since it isn´t my mother tongue

I say it everytime I comment and I'll say it again..you are truly an amazing young woman. A hero for all women. Your strentgh, love, and compassion shine through your posts. I pray nothing but blessings upon your life and your future with your love, Stephen. He sounds like an Angel the Lord sent to you to help heal your aching heart. So happy for you both. (ps. I'm 30 with no ring yet so any woman who gets a ring these days, I hate on...but when I saw your last post I cried tears of joy. =) Prayers as you continue your journey. Tripp is definitely shining on you...

I have been following your blog and praying for you for ages! While my heart breaks for you, I am so thrilled that you and Stephen have found each other. What a blessing. No doubt Tripp is up in heaven cheering you on and wanting his mommy to be happy!

Hi, Courtney! I posted several days ago, but I felt the need to write again. Someone else wrote that they love/hate your blog, and I guess I feel the same way... I adore Tripp. He was such a handsome little man, but I have spent endless hours reading your posts and watching the videos and looking through his pictures, and I've cried through the whole thing. It breaks my heart how uncomfortable he must have been, how he must have lived each day in pain, how, at the end, he couldn't even see his mommy.

I know that you have your faith to give you comfort and that makes me happy for you... But how did you get there? I have three children of my own and have been very lucky that they are healthy. Were you always so sure of Gods love? Did you learn that from your experiences with Tripp? I am not religious. I like to believe we all have a purpose, but sometimes I wonder why God would make an innocent child suffer in the ways that Tripp must have and the way so many other babies do.

From your blog I've realized how much I take my children for granted. I look at my youngest, now only 6 months, and wonder what I will learn from him. The first night I found you, I went in his room and woke him up at 3 am just to rock him. I want to be where you are-- to be as certain of my faith and to be able to take comfort in it. I don't know if you will ever read this, but I think you are such a strong woman and that Tripp was very lucky to have you as his mommy.

I've been lurking on your blog recently, but I want you to know, I always check in on you. I think of you and Tripp every single time I see Elmo (which is often because I work with young children), and I hold you both close to my heart. love, Emily

I've read your blog and looked at your pics...and what an amazing mother you are, a true inspiration. Your son was a beautiful, happy, sweet blessing. You are so lucky to have been his mother. My heart goes out to you and your family.

I am so glad you have been invited to share your experience with different organizations. Your fight for Tripp's life is truly inspiring and helps people to become more aware that human life is precious and full of meaning.

Keep working hard to heal and live a good life. Please pray for me and my family.

You never cease to amaze me. You are strong and courageous and I know Tripp is proud of you! I really believe that Tripp knows his cousin and told him all about the amazing family he is going to join. I am excited for all the wonderful things going on in your life. I don't think there is anyone better to speak at the dEBra conference- you are a true EB warrior!! Thank you for always reminding me by your sweet words to never take my kids for granted.

As always, your post brought about a wave of pretty much every emotion within me. I am so happy to hear about the great things in your life, and I still think about you and Tripp EVERY single day. His story has changed my attitude in so many ways. Thank you for sharing and continuing to update.

Great newsy post! You are doing just fine, Courtney. Step by tiny step, you are getting used to living without Tripp and are finding happiness here and there and helping make a difference to others and recognizing others who make a difference to you. Yes, you are special! Congratulations on the Debra award! I hope you post pictures of each step of the house you are building and keep your wedding plans managable so you aren't exhausted and crazy by the time your wedding day rolls around.

I hope that one of these days I'll be able to read one of your posts without crying. You are such an inspiration and a model of strength. But I sense that you feel very weak by allowing yourself to feel sad. You have no idea how strong you are for holding yourself together and pushing forward. I am truly in awe of it. And I know Tripp is so proud of you and proud to have had you as his guardian while he was here. Keep pushing on and congratulations on all of your good news. Celebrate those happy times!

You absolutely deserve these honors...each of them. Everything you write makes me cry. My heart breaks and aches for you. But somehow through the sadness, I'm crying tears of joy. I feel like you bring out the cheerleader in me again-hehe. Since Tripp has passed on, I've wanted nothing more than to see you happy and getting all the good things in life you deserve. So happy to see what is happening in your life! And to go to Sesame Street...that just is the icing on the cake. That did it this time, bring on the waterworks! So much respect for them to invite you there. And the fact that it would make your LIFE as you said. Well, that just makes it that much sweeter! Still praying for you!

Hi Courtney I've been following your blog for a long time now. Your a inspiration for alot of people. There's a lady named Amy freidel from Florence,al she has a 19 day old baby named Easton with eb. Fighting hard for his life. Keep sharing your warmth and love and it shall surround you.

Earthly good byes are so hard to say till we turn our thoughts on the heavenly hellos.May God richly bless you with peace.Just checking back for any new posts you may have written.I’ve been a follower on your blog for a while now and would like to invite you to visit and perhaps follow me back. Sorry I took so long for the invitation.

You folks do not know me, but I have been following your blog and the blog of several others that you also follow regarding children with EB. I have been managing the Prayers for Cheyenne Rae FB page and also have created her website at www.prayerforcheyenne.com. ON her FB prayer page it was shared with us a FB page for this little guy with EB. He was born at Auburn Memorial hospital had never seen a case like this so he was transferred to Crouse, where the doctor had only seen 2 in his entire career.

I just wanted to share this with you, as I see this family needs your help. I am also going to send a message to Cortney and Jonahs mommy...you guys have done so wonderful with your little ones and each other, I pray you all will be able to bring some comfort to these folks. God Bless.

Was curious...with the new changes in your life, engagement, being an aunt, etc. Do you and your fiance plan to have children? I know that's hard to think about with the loss of a child, but was curious.

I was just thinking about you and Tripp today and thought I would pop on to see if you had posted anything recently so I'm late to the party but I just want to say congratulations on your engagement!! The picture with the butterfly is just amazing and such a beautiful sign from God and Tripp.

I would like to offer my congratulations on your engagement/wedding and on the honor award. You are an amazing mother and deserve this recognition.I have followed your blog for a very long time. I remember Tripp's first birthday. What a happy little man. I want to say that your raw honesty of your journey is moving, emotional, and motivational. I feel pain, I feel anguish, I feel longing. You did a beautiful job decorating for Tripp's 3rd bday. Elmo is such a special furry friend. My daughter has the same little plastic hand sized one. I am continuing to pray for you as every day is a chance of putting one foot in front of the other. I have no advice. I have no offer of books to read. I have not walked in your shoes and I'm not a trained counselor. But, I am a sister in Christ and I humbly offer my prayers of blessing on your new marriage, prayers of blessing on the beautiful love you have for your son, and prayers for mercy and peace when the moments are the hardest. You are an inspiration and a hero mother. You packed more love in to 2 years and 8 months then many moms do into a lifetime. Bless you for that! They say that a woman who loses a husband is a widow. A woman who loses a parent is an orphan. But there is no name for a woman who loses a child. Maybe it's to painful to give a name. Maybe it's to unnatural. But it happens, and more often than many people know. Social media is spreading the word of such things more and more today. I am now praying for a little boy named Easton. Just like I did for Tripp. EB is such a nasty, awful disease. I hope that all you have done and do will help find a cure for this. No baby should still be suffering in today's world of expensive homes, cars, such intelligent minds and science materials!God bless you, sweet Courtney! God bless your sweet Tripp. God bless all the people that loved and cared for Tripp! God bless all you will do in the future so that no parent or child will have to suffer like you two did. May you see the rainbow after the storm you are weathering right now. I can only imagine the beauty that little Tripp is seeing right now. If he truly knew you like you know him (that little man could like up a room with his smile!), then you know he is so excited for you and wants you to have another man to take care of you. I believe he has comfort in knowing that he didn't leave you alone. So sweet! Just like the Tripp you told us about. Always a sweet, sweet gentleman, even in his last moments. Love and hugs from TX.

Every time I read one of your posts I cry, not because I pitty you but because you are so open and I can literally feel the love you have/had for Tripp. I think it's awesome that you are going to counseling and getting in the gym, both are such positive ways to help heal your heart. I am so so so excited about all of the good things in your life. Prayers for you and Matt!!!!

I have been surfing online more than 3 hours these days, yet I by no means found any attention-grabbing article like yours. It is beautiful value enough for me. In my opinion, if all web owners and bloggers made good content as you did, the web will probably be a lot more useful than ever before.

I can't imagine how hard your struggle must be to move forward, but yet yearning for the past at the same time -- like being in quicksand. I just hope you never forget that your baby watches over you, and just like you gave your every waking moment to him, he watches and waits for your happiness. Please know that you honor him and his life with your good times, and I envision him as some sort of heavenly event planner, making all sorts of wonderful things cross your path, in the hopes they will bring you joy.

When you get to meet Elmo, it will be so wonderful. I think many many people view you in that same way -- you are a hero, and so many people will be thrilled when they get to meet you. You are, from now on, your own style of celebrity. You have touched so many hearts and I know you will continue to do so.

Congratulations on your engagement, your new house, and the new baby coming to the family. But mostly, congratulations on the recognition from DebRA. You deserve it.

Dear Courtney, I'm a mom myself, I know how heartbreaking it is to see your child in pain, and yet you have to see it everyday and still be strong. That smile on your face in each and every one of your picture with Tripp tells me how strong and grateful you are for having him. I hope you still have that smileI'm the 95th person commenting on this post and lives a continent away from you, so believe me there are a million of people out there who feel for you and pray for Tripp :)